Join Us to Ensure the Rare Disease Community is Heard This Summer

During the summer recess, Members of Congress return to their home states to hear from constituents and attend community events.  Meeting with them during this time is a critical opportunity for rare disease advocates to build relationships, educate them on key legislative needs and follow-up on requests made during Rare Disease Week on Capitol Hill or phone calls or emails about legislative issues since then.

As a FREE service to the rare disease community, Rare Disease Legislative Advocates (RDLA) will set-up a meeting for you and fellow advocates at your convenience. Any rare disease advocate is encouraged to join us for In-District Lobby Days, held from July 18th to September 5th.  Registration is free and available online through Friday, July 15thYou can specify when you are available during the summer recess and how far you are willing to travel for a meeting.

This is a critical juncture for our community.  Although the 21st Century Cures Act passed the House of Representatives with broad bipartisan support last July, the Senate has yet to pass the companion legislation.  In the current partisan environment in Washington, it is important for Members of Congress to hear first-hand how united the American public is on the subject of medical innovation.  A recent poll found that 78% of Americans think Congress should prioritize fostering medical innovations, with an emphasis on finding cures for diseases that still lack treatments.  By joining us for In-District Lobby Days, you can urge your Senators and Representatives to support 21st Century Cures and advocate for other legislation benefiting our community.

To register for In-District Lobby Days, please click HERE.  RDLA will use the information you provided to schedule meetings for you, and help you prepare by providing key background materials and hosting a preparatory webinar to be held on July 13th.

It is up to each of us to ensure the voices of rare disease patients and caregivers are heard in Washington.  Please help us tell Congress loud and clear:  WE NEED CURES NOW!

Nominations for Fifth Annual RareVoice Awards Due by July 31st

Do you know anyone who has gone above and beyond to become a rare disease policy leader or advocate in a state or in our nation? Rare Disease Legislative Advocates (RDLA) is seeking nominations for the RareVoice Awards to be given on November 16th in Washington, DC.

Nomination categories include:

Congressional Staff

Has a staff member of a member of the U.S. House, Senate or Congressional committee been instrumental in helping to create and/or advance legislation that benefits the rare disease community?

Government Agency Staff

Do you know a government agency staff member who has gone out of his or her to listen to rare disease patients and then taken action to benefit the community?

Patient Advocate – Federal Level Advocacy

Do you know an advocate or organization that has worked with Congress or federal agencies to spearhead change on behalf of the rare disease community?

Patient Advocate – State Level Advocacy

Do you know an advocate or organization that has crusaded on the state level to support and advance rare disease legislation or regulatory reform?

RareVoice Award nominations are open to the public. Winners will be selected by an independent committee composed of representatives from the rare disease community including previous RareVoice winners.

To nominate a rare disease champion, please click HERE. Nominations close on July 31st, 2016.

The winners will be announced LIVE at the fifth annual RareVoice Awards ceremony on November 16that the Arena Stage in Washington, DC and will receive the coveted Abbey award.

The award is named after Abbey Meyers, the founder of the National Organization for Rare Disorders (NORD), and represents the “rare voice” speaking on behalf of patients, especially children, who might not otherwise be heard. The Abbey statue was commissioned for the RareVoice Awards from the renowned sculptor Nobe, who crafts each statue by hand in bronze.

Press Release: RareVoice Awards Gala Honors Rare Disease Advocates and Leaders on Capitol Hill

Contact: Stephanie Fischer

sfischer@everylifefoundation.org

RareVoice Awards Gala to Honor Rare Disease Advocates and Leaders on Capitol Hill

Washington, DC (November 4, 2015) – Rare Disease Legislative Advocates will honor rare disease advocates and leaders on Capitol Hill at the RareVoice Awards Gala tonight.

Members of Congress will be recognized for their leadership on the 21st Century Cures Act which has several provisions critical to the rare disease community, including incentives to spur development of new therapies. Representative Fred Upton (R-MI) will receive a Lifetime Achievement Award. Representative Gus Bilirakis (R-FL), G.K. Butterfield (D-NC) and Diana DeGette (D-CO) will be honored with Congressional Leadership Awards.

Advocates are hopeful that key provisions of the 21st Century Cures Act will be included in the Senate companion legislation, Innovation for Healthier Americans, and that the Senate will act quickly to advance it. A delay in legislation is a delay in new treatments.

Congressional staff to be honored for efforts on behalf of the rare disease community include Clay Alspach (House Energy and Commerce Committee), Saul Hernandez (Rep. G.K. Butterfield), Sara Mabry (Sen. Bob Casey), Harrison Matheny (Rep. Ryan Zinke), Molly McDonnell (Rep. Leonard Lance), and Carly McWilliams (House Energy and Commerce Committee).

Rare disease advocates to be recognized for federal advocacy include Annette Bakker (Children’s Tumor Foundation), Ronald Bartek (Friedreich’s Ataxia Research Alliance), Noah Coughlan (Run for Rare), Woody Crouch (Sturge-Weber Foundation), Lisa and Max Schill (RASopathies Network), Steve Smith (National MPS Foundation), Steve Walker (Abigail Alliance), and Rob Whan (Caleb’s Crusade).

Rare disease advocates recognized for state advocacy include Sharon King (Taylor’s Tale), Kirsten Norgaard (Adrenal Insufficiency United), Elisa Seeger (Aidan Jack Seeger Foundation), Bruce Thompson (ALS parent advocate), and Patricia Weltin (Rare Disease United Foundation).

A Lifetime Achievement Award will be presented to Dr. Stephen Groft for his dedication to stimulating research and advancing development of therapies during his tenure at the Food and Drug Administration (FDA) and National Institutes of Health (NIH).

Thank you to Shire, the Presidential Sponsor, and other sponsors including AbbVie, Alexion, Amgen, Amicus, Genzyme, Novartis, PhRMA, Raptor, and Vertex.

Additional information is available at http://rarevoiceawards.org/.

 Rare Disease Legislative Advocates is a collaborative organization designed to support the advocacy of all rare disease groups. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure rare disease patients are heard in state and federal government. For more information, visit http://rareadvocates.org/.


Click here for a PDF of this press release

Precision Medicine: New Frontiers for Rare Diseases

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Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs:

Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), will host a briefing on:
Precision Medicine: New Frontiers for Rare Diseases

Thursday, November 5th, 2015
12:00 pm – 1:00 pm (lunch provided)
Rayburn House Office Building
Room: B318 

speakers for precision Medicine briefing

Moderator: John Crowley, Chairman & CEO, Amicus Therapeutics

  • Matt Might, President, NGLY1.org & Associate Professor, University of Utah
  • Erynn Gordon, Director of Clinical Development, 23andMe
  • John Stone, Counsel, Committee on Energy and Commerce – U.S. House of Representatives
  • Dr. Christopher Austin, Director, National Center for Advancing Translational Sciences, NIH
  • Sean Sigmon, Business Development Director, Oracle Health Sciences

Limited Seating, RSVP to attend

Can’t attend? Click here to contact your congressional office to ask them to send a representative!

Hosted by:

Precision Medicine Logo Mashup

Rare Disease Legislative Advocates’ North-East Conference

 

Monday, July 20, 2015

Stanley Bergen Building, Rutgers University, Newark, NJ

Rare disease patient advocates and other stakeholders from the rare disease community came together on Monday, July 20th, 2015 in Newark, NJ for our inaugural North-East Legislative Conference. The goal of our new regional legislative conferences was to update advocates about important legislation advancing through Congress and to prepare them to meet with their Representatives during August Recess.
This year Congress is working on legislation that will have a huge impact on drug development and approval, and as a community we must join together to ensure the legislation benefits rare disease patients and is passed in both the House and the Senate.

 

 

This event was a great success view photos here:
RDLA-NEConf-talking rare diseases
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RDLA-NEConf-pallone in audienceRDLA-NEConf-lanceRDLA-NEConf-lance advocatesRDLA-NEConf-juliapalloneschillionsRDLA-NEConf-eatingRDLA-NEConf-dvocacy panelRDLA-NEConf-andy and advocatesDean P NE confNE Conf hinj
Pallone speaking Jill Wood Rutgers dean
Mike Illions thumbs up
Co-Hosted by: 

 

Thank you to our sponsors:NJ Leg Conf Logo Mashup 7.13.3

Rare Disease Congressional Caucus Briefing – 21st Century Cures Initiative: Priorities for the Rare Disease Community

View the Presentations and photos from 2015 Legislative Conference

RareDiseaseWeek-Logo-cmyk

Click Here to view presentations and photos from this year’s Rare Disease Legislative Conference:

Read more

Rare Disease Congressional Caucus Briefing: Urgent Healthcare Policy Needs of the Rare Disease Community

Rare Disease Legislative Advocates & the National MPS Society in coordination with Rare Disease Congressional Caucus Co-Chairs:
Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), held a briefing,

Urgent Healthcare Policy Needs of the Rare Disease Community

Thursday, February 26th, 2015

Russell Caucus Room

Lunch Provided by event sponsors AbbVie, Alexion, Raptor, & Shire
Moderator:  Anthony J. Castaldo, President, US Hereditary Angiodema Association (HAEA)
  • Limited Access to Specialists in Private Insurance Networks, Stephanie Bozarth, National MPS Society
  • Coverage Gaps for Medically Necessary Foods, Nicole Dreyer-Gavin, PKU Parent Advocate
  • Medicare Coverage Challenges for Cystinosis Patients, Kristina Broadbelt, Patient Advocate
  • Step-wise Therapies: Negative Implications for the Health of Rare Disease Patients, Anthony J. Castaldo, President, US Heriditary Angiodema Association

 VIEW THE BRIEFING HERE

Briefing Hosted by:

 

October RDLA Meeting

Please join us for an
Advocates Luncheon/Conference Call

Thursday, October 16th, 2014
12 noon to 1 p.m. EST

Location:
RDLA DC Office
1101 14th Street NW, Suite 700
Washington, DC,  20005

Lunch will be provided

Click the titles to view PowerPoint Sides:

Please click here to listen to the audio recording of the call

Mark your Calendars!

BIO Patient & Health Advocacy Summit: Oct 14-15 2014, in DC

 

BIO is throwing their Patient & Health Advocacy Summit, titled “The Power of Partnerships” this October 14-15 in Washington, DC.

The event voluntary brings health organizations and the biotechnology industry together for two days of policy-driven panel discussions, best practice seminars and invaluable networking opportunities. The summit will feature speeches from Janet Woodcock, who serves as Director of the FDA center for Drug Evaluation, Representatives Diana Degette (D-CO) and Joe Pitts (R-PA), and many more.

To register and find out more, clickbit.ly/biosummit